Archive for the ‘ Leukemia ’ Category

Big changes: moving, treatment, everything

As usual, I am making this post much later than I wanted. I’ve had family & friends visiting a lot over the last few weeks, have been very sick, and have been inundated with appointments.

Treatment: I’ve gone through 3 rounds of IV chemo (5 days, 10 days, 5 days), and a few weeks of a chemo pill. I’ve had multiple injuries, infections, antibiotics, vomiting sessions…I’ll spare the rest of the fun details. The good news is that I appear to be cancer-free at the moment, though there are likely some “bad cells” hiding out somewhere. I begin a 4th round of 5-day IV chemo on the 18th. I’m also now on oxygen 24/7 after my lungs continued to get worse, partly due to more pneumonia.

After that week of IV chemo, we are moving back to my home town of Pittsburgh, PA! My husband and I are completely exhausted, and we just can’t do this anymore. We are slipping…missing meds, missing appointments, late to every appointment, and just completely unorganized and behind on everything. I have a small army of a family that can take many burdens away and allow us to focus on what is most important: healing our bodies and minds. Switching hospitals at this point in treatment with such a complicated history is a nightmare, but it will have to be worked out. Most likely, I will stay on some kind of regular IV chemo regimen to keep me in remission. I will continue to need treatment for the GVH (Graft vs Host) problems I have.

A huge thanks to my friends and family here in Omaha and in Pittsburgh. My family is trying to raise enough money to make this move happen. Once again, I ask that if you have the ability to make a donation, please do. There is a GoFundMe link at the top of each blog page. I have used prior donations for dental work and specialty lenses, but I really need help getting home within the next couple weeks. I am immensely grateful for everything that has been donated, and amazed at the amount that I have received. Eyes and teeth are very important!

I will post another update as soon as I am able to. In the meantime, stay frosty :)

As if things weren’t complicated enough…

Today’s blast percentage (percentage of leukemic cells in my blood sample) is 79, down from Friday’s 88%. I did not receive any transfusions today. I’ve created a chart below for easier tracking.

My case manager called this afternoon & told me that instead of seeing my cancer doctor on Thursday that I will be seeing her tomorrow. We are also starting day 1 (of 10) of round 2 of chemo tomorrow. I also have the Visiting Nurse Association coming to the house tomorrow morning to begin physical therapy at home (yay!) and after chemo I have another nurse visiting me in the home (my insurance company’s House Calls program).

Wednesday we pick my Dad up from the airport in the morning (yay!), then it’s off to the hospital for bloodwork, an appointment with Infectious Disease (follow up on the legs), chemo, and a couple friends are coming to the house that evening.

I have all but 2 days booked through the end of the month, and it’s all subject to change at any given moment. As my Case Manager says “With Leukemia, we are always flying by the seat of our pants”. I am trying very hard to keep up. I really hope this next round of chemo gets the disease under control without killing me.

Percentage of leukemic cells in my blood samples:

Friday’s numbers, Saturday’s breathing

The percentage of leukemic cells in Friday’s blood sample was 88%, up from Wednesday’s 77%. I also got a platelet transfusion.

Saturday was probably the most difficult day I’ve had where my breathing is concerned. I could barely move, and laying down was almost impossible.

Today the breathing is better, and I was able to do some very light tidying around the house.

The bloating/swelling is still pretty bad, mostly in my hands, feet, legs & abdomen. I now have 2 pair of shoes/boots that I can wear. They are a full size larger than what I normally wear, and are still a bit uncomfortable with all the foot swelling.

Going forward, I have labs Monday, Wednesday & Friday scheduled, and a few other appointments. Hopefully that magic number decreases.

Friday 4/6: 81%
Sunday 4/8: 82%
Monday 4/9: 82%
Tuesday 4/10: 79%
Wed 4/11: 77%
Friday 4/13: 88%

More tests and bloodwork

Short version: I’ve felt pretty horrible the last couple days, and have been sleeping a lot. I got some blood yesterday, which helped a little. The amount of cancer in my blood has decreased slightly, which is good. We’re just watching & waiting until we can do the next round of chemo.

Long version: I had bloodwork Tuesday & Wednesday. When I woke up Wednesday morning, I knew my hemoglobin was low because I could barely breathe, and had no energy. It was difficult to even hold my head up. My counts continue to go down, so I am getting transfusions. I got blood yesterday, and most likely I will need platelets tomorrow. Here are the numbers for the amount of cancer in my blood:
Friday 4/6: 81%
Sunday 4/8: 82%
Monday 4/9: 82%
Tuesday 4/10: 79%
Wed 4/11: 77%
I go in again tomorrow for more bloodwork. It’s been difficult to get all my pills in because I am sleeping so much, but we are trying our best. Tuesday I had 4 appointments, which was very exhausting. Here’s an update on those:

Infectious Disease says that I have a staff infection in my lower legs, mostly due to the massive swelling allowing bacteria under my skin. They feel that 3 antibiotics is sufficient, one of which targets this type of infection.

Walking test: My oxygen level during my walking test was 99 to 100%. I became so short of breath at one point that i was gasping for air & had to sit down. The insurance company won’t approve oxygen with this high level of blood oxygen, and I’m told that even if I did get oxygen, it wouldn’t do anything because there aren’t enough red blood cells that aren’t already saturated. There is nowhere for the oxygen to go. This is very frustrating, because I am obviously having trouble breathing but there is nothing that can be done beyond what we are already doing (pills, inhalers).

Therapist: It was so nice to see my therapist. I hadn’t seen her since my cancer came back. I will continue seeing her once a week while things are rough, and she has some great ideas for things that we can work on that will cut down my stress.

I already mentioned the bloodwork results above. Hopefully tomorrow’s bloodwork shows good things, and hopefully I feel well enough to post an update about it.

What’s next? We have options…

I had an important appointment with my cancer doctor today.

Short version: We will begin another longer round (10 days) of the same chemo drug as soon as possible, then play the waiting game again. We may use another drug with the 3rd round of chemo if needed. My doctor will work hard to make sure I get oxygen, as breathing was a major problem during this last round of chemo.

Long version:

I have 2 new gene mutations:

The NRAS gene, found in about 10& of patients with my type of cancer. There may be some clinical trials, but most of the time the trials are for patients with an organ cancer, not blood cancer.

The SMC3 gene, found in about 1% of patients with my type of cancer. This gene has an antibody therapy called Mylotarg that can be used either alone or with chemo. We plan on possibly using it with round 3 of chemo. Normally there are 2 doses, given on day 1 and 5. I will need to be in the hospital for a couple days with each dose in case I have an allergic reaction.

The chemo pill I started last Friday is to hopefully bring down my white cell count, which is high (this is not good and is directly associated with the disease). It will bring down my other blood counts as well, like with any chemo drug.

Once my blood counts stabilize, we will plan on doing 10 days instead of the previous 5 days of the same chemo drug. This could be any day.

My doctor confirmed that unless we can get this under control, we aren’t talking about months that I have left.

My doctor is going to do whatever possible to get me on oxygen. My body’s biggest problem with the chemo was that I could barely breathe for a few days. I feel like I could tolerate a harsher chemo drug if I could breathe better. I have an appointment tomorrow to do a walking test. I will have to use an assisted device (rollator) for the test. Hopefully I can walk fast enough for my lungs to show how terrible they can be. I also have an appointment tomorrow with Infectious Disease to look at my legs. I will also get more bloodwork tomorrow, and I have my first appointment with my therapist since my relapse…it will be a fun talk.

I plan on getting another update out tomorrow on bloodwork & the walking test. Hopefully no additional drama is thrown my way in the meantime.

The storm is here, and getting worse

Short version: I began to feel terrible Monday April 2. I’ve had small spurts of good times, but I probably haven’t had a full good day since then. I’m very fatigued and retaining a lot of fluid, therefore I can barely stand or wear shoes. I still can’t wear pants because I’m so swollen in the torso. My breathing has also been worse and I barely have an appetite. There is consistently more cancer in my blood as time goes on. I will have more news after tomorrow’s appointment with my cancer doctor.

Long version: The percentage of cancerous cells in my blood has gone from 16% (when they first found it March 1st) to 82% (today). I think we need a harsher chemo drug, which was needed to get me into remission the first time around. I So far, I’ve had 1 round of chemo (3/21 to 3/25), and I began a chemo pill this past Friday (April 6th). I have only needed a blood and platelet transfusion once, which is good. My white cell count is still high, which is bad. I meet with my cancer doctor tomorrow to discuss the gene mutation results (which she wants to discuss in person…uh oh), and to talk about what comes next. We don’t want to end up killing me before we kill the chemo. Since last Wednesday my swollen legs have been red for about 3″ near the ankles, and the tops of my feet. I’ve seen 4 doctors who all say they have not seen this exact thing before. i can’t tell you how many times I heard that, and 99% of the time it’s something bad. The redness has remained the same over these last few days. My legs and feet are very painful. My hands and wrists are very painful and swollen. I am swollen all over & can barely move. I’m starting to feel claustrophobic in my body, it’s quite horrible. I’m also feeling very panicked that I don’t really have anything planned for my death. Some notes here and there, a death notification form on the blog, some contacts in my phone. I feel more panicked the more those bad numbers go up. Things are getting pretty scary.

On a more positive note, I can’t thank everyone enough for all the well wishes, hugs (virtual ones too!), the stuff, and just everything. I truly feel loved and special!

Also, I am afraid that I will not get the glyph of my Warframe idol (*cough* Tavier) before I die…videogame reference. The person who I will my account to must be sure to earn it if I don’t :)

Calm before the storm

Short version: Yesterday was my last day of chemo (for now). For the next 2 weeks, I go to the hospital for blood work and/or transfusions every Monday, Wednesday and Friday. Most likely we will not have any updates on the disease for a couple weeks.

Round 1 of chemo (day 5 of 5) finished yesterday. I feel pretty good so far, the chemo doesn’t normally affect how I feel. Over the next few days my white blood cell, hemoglobin and platelet counts will continue to fall. The blood work results will determine whether or not I have to stay for one or more transfusions. They can potentially be very long days.

I received my breathing machine on Friday. It’s very small and quiet, and I am enjoying it a lot. It includes a humidifier. The chemo dries the body out something horrible.

Going forward, I will have blood drawn every Monday, Wednesday and Friday. The results of the blood work will determine if I will need to stay for blood products that day. I could receive multiple transfusions, which can not be run at the same time. Low hemoglobin will give me fatigue, headaches and take my breath away. Low platelets will give me headaches, lack of clotting, mouth sores, mouth and nose bleeding, and could kill me if I fall (internal bleeding).

How can you help? Things are very overwhelming as I am trying to catch up with friends and family and prepare for whatever happens next.

I now have a form to the right side of the blog titled “Death Notification”. If you want to be notified upon my death, please fill it out. Hopefully this is not for many years to come (of course) :)

You can subscribe to the blog to get updates via email. There is a form to your right if you’d like to subscribe.

I now have an Amazon wish list. There is a button for it at the top of the blog.

We can always use help with the yard. Fall’s leaves have yet to be raked.

We can always use food, especially prepared food. I can’t prepare meals anymore and my husband is being pulled in too many directions.

If you have any recommendations on things that you think would help us out, I am all ears.

Thanks again for everything :)

It’s back :(

I have been getting blood work once a month. Everything has looked good until the blood that was drawn on March 7th. I got the news on Friday the 9th, which was 16% bad cells. I had a bone marrow biopsy on Monday the 12th, and got those results on Friday the 16th.

Recurring AML (Acute Myeloid Leukemia), 61% leukemic cells in the bone marrow. This is almost double the number of leukemic cells in my bone marrow in October 2013 when first diagnosed. I have an appointment with my doctor Wednesday the 21st to discuss options. Most likely we will begin with chemo ASAP.

My options are now limited due to my declining health and GVH (Graft vs Host disease). I have had a lot of pain, bloating, swelling, fractures, and other issues over the last year. My GoFundMe story gives a good overview.

I’ll be updating the blog more with everything that’s going on.

Been a rough summer

I have not been feeling well and have had an insane amount of appointments. I apologize for the lack of updates during this time.

Skin: After decreasing the prednisone, I began to have problems with my skin. My arms swelled up to the shoulders, my legs swelled from my calves up to the top of my thighs, and my lower abdomen swelled around my entire body. The skin in these areas became hard, tight, and thick, making it difficult to move. The skin is also lumpy. This has caused a great amnount of pain and discomfort. I have been diagnosed with skin GVHD (Graft vs Host Disease). Apparently this is one of the most difficult types of skin GVHD to treat. How is it treated? Photopheresis and anti-rejection meds. We moved me from monthly photopheresis to weekly and started me on Sirolimus, an anti-rejection medicine. The Sirolimus causes urinary issues, edema and abdominal swelling for me. It also gives me very shaky hands/tremors. Photopheresis is usually a 3 to 4 hour treatment, and is given 2 days in a row. In other words, each completed treatment is a 2 day ordeal. Per my GVHD doctor, decreasing prednisone too fast can cause the skin GVHD to spread. I had a very small amount of it unknowlingly prior to the prednisone decrease. I will begin seeing a dermatologist in a couple weeks. I have also just started a new medicine for GHVD called Jakafi. It’s been recently approved by the FDA for treatment of GVHD where prednisone failed.

Strength: I’ve also been going to physical therapy 2 days each week. My range of motion and strength are terrible, and many parts of my body are seized up, especially with the skin GVHD…for example, I can’t straighten my elbows or knees. I will begin occupational therapy in a couple weeks, which will address my hands. I was able to puchase a quad cane, which has been a great help. My knees still continue to give out if I bend them too much.

Eyes: My right sclera lens has been running the eye. I developed a cyst on my eyeball because of this, and have had a total of 3 lenses for that eye now. My warranty has expired, so the next one I order I will have to pay the $400 full price. My doctor is looking into having the lens vaulted in the section where it’s rubbing my eye.

Teeth: Pehaps the best news – I have begun to get dental work done, thanks to the donations that I’ve received! So far I’ve had 3 teeth pulled and 6 cavaties filled. Most of the cavaties were fillings that had fallen out of the front of my top teeth . I am no longer scared to smile. I have a lot more work that needs done, but it’s a good start.

Gut/Food: I’ve also been disgnosed with GHVD of the gut and put on a new medicine for that. It’s a steroid medicine that coats my digestive system. I’m also back on an acid reflux medicine. I feel a little better now that I am on these meds. Fortunately I have been able to gain weight, and I’m at a healthy weight again. I continue to have a very dry mouth and choke on just about everything I eat, so the eating has not been any easier, especially after having 3 teeth pulled.

It’s getting increasingly difficult to manage my meds and appointments. I’m up to about 20 medications, and I don’t even know how many specialists I am seeing. I can’t swallow pills, so they either need to be crushed or they have to be liquid. I have been sleeping a lot, and I’m back on pain pills, mostly for my mouth and legs. I spend a lot of time with my feet up because of the pain and swelling in my feet and legs. It’s quite unpleasant.

Of the donations that I have received so far, I have enough to cover one more set of fillings at the dentist and 1 replacement lens for my right eye. Anything that you’re able to send my way is greatly appreciated!

Time flies

I didn’t realize it had been this long since my last update. I guess time flies when you’re having fun? There have been a few things happening over the last couple weeks.

First, my mother in law got married on June 3rd. It was a great time, and a beautiful ceremony right in their back yard. It was great to see my sister in law, her husband, and their 2 girls. It was also great to meet my father in law’s brother and his wife, and all their friends. Congrats to the newly weds!

My contact lens prescription was changed on the left, and the fit was changed on the right. This Thursday I have my 2 week follow up with this set. The left one feels great and the vision is much clearer. The right is still giving me problems. It gets foggy to the point of having to remove it, clean it, and put it back in, sometimes several times a day. It also seems like the area between my eye and the lens is not always holding saline and dries out. I also think that the prescriotion needs to be stronger on the right lens. Thankfully we still have time for the manufacturer to make changes free of charge.

I had a swallow test scheduled for last Tuesday, esophageal manometry. They were going to send me home with a tube down my throat for 24 hours to measure my acid PH level. They discovered scar tissue in my esophagus during my last endoscopy, and want to see how bad my acid reflux is. I am currently not taking any medication for it, and it doesn’t bother me too much. I was unable to do the manometry test unfortunately. There was a great deal of trouble navigating the tube from the back of my nose into my throat. As soon as the tube touched my throat, I gagged, choked and dry heaved. I also couldn’t breathe. It was horrible. We tried several times but it just wasn’t happening. The manometry test also shows them where to place the tube for the acid test, so they couldn’t do that either. I can’t say I was terribly upset, as I was not looking forward to having a tube in my throat and nose for 24 hours. I have a follow up with my GI doctor in the next couple weeks, so we will have to get a plan B going.

Tuesday and Wednesday I had Photopheresis treatment. It went well. It’s always nice to see the Red Cross nurses that do the treatment. It was the first time I had treatment at the new Fred & Pamela Buffet Cancer Center. It’s absolutely gorgeous with blown glass sculptures and artwork everywhere. Everything is brand new over there, including heated recliners in the treatment area, which made me pass out. For the first time, I slept through treatment…both days :)

I am still having a lot of difficulty with the prednisone side effects. I am retaining fluid, and have swelling in my face, arms, legs and feet. I have a great deal of muscle weakness. I am now on medicine for my bladder issues, which is helping. I am very shaky too. We are slowly reducing the doseage, so it will probably be a few weeks until I am completely done with it.

I fell again this last Friday night coming up the stairs into the house. My right knee gave out & it hurt pretty bad. It’s still sore, but I don’t think I did any permanent damage. I am nervous even walking around the house, the knees feel like they are going to give out at any time. I am being as careful as I can. I’m considering getting a cane that has the rubber feet.

I am slowly gaining weight, but my dietician wants me to gain faster. I was down to 96 pounds, and I am about 106 now. I should be about 115, or 125 with my usual amount of muscle. I have been eating as much as I can, and doing Muscle Milk. I’m also adding peanut butter powder to my cereal, and have switched from almond milk to whole milk in my cereal.

Overall I am doing alright, but I have a long way to go before I can do anything indepently. I’m finally feeling well enough to start walking on my treadmill again. Good thing I have something to hold onto while doing that!